Be careful what you pray for.... - Page 3

07-23-2007, 06:51 PM

Bonnie,

If you decide on chemo, you might want to read the synopsis I posted today from ASCO. It discusses best practices for taxol and, I think, taxotere, with respect to schedules. It had some interesting statistics, although I must say I preferred every three weeks, just for the convenience.

Good luck and keep us posted.

07-23-2007, 06:54 PM

One more thing--we are close in situation. I also got a probably benign, come back in six months. My husband was taking a trip to South American for seven weeks and wouldn't go unless I had a definite benign finding, so I went to a breast surgeon, who did a biopsy, and it was DCIS, later found, like you, to be invasive: 5mm. But now I even wonder about that, as my pathologist was careless also.

Hopeful · 07-23-2007, 07:42 PM

Bonnie,

I am so sorry you are having to deal with this confounding uncertainty at this time. I am with Grace on this, get a GOOD second opinion and maybe a third on those slides, since the original opinion seems questionable. This part of the process (i.e., getting your slides read properly) should NOT be this hard. I know you can fed ex your slides to Johns Hopkins in Baltimore, for example (all their info is on their website) to have them reviewed by their pathologist. Many of the others on this Board can suggest other top cancer facilities that have a similar program. This is the one part of the treatment that does not require you to make personal visits, so you have a lot of options for pathology review.

Hopeful

tousled1 · 07-23-2007, 08:12 PM

Bonnie,

I would have to get a second opinion on the pathology. You still have time to do chemo/herceptin. I'm amazed at the mistakes that are made. To me those mistakes should just never happen.

BonnieR · 07-24-2007, 04:30 PM

Everyone, thanks for your thoughts on second opinion re: the slides. I was on my high horse and wanting to do that too. Then I thought about it and realized that other opinions are not going to show LESS cancer. And even if they discovered MORE, that would only seem to suggest that chemo is indicated even more too. So despite the shoddiness involved, the outcome is the same.
I dont want to do chemo but would always feel regret if cancer returned. I thrive on regret!! And , as much as I want to, I really can't entirely believe the doc who says I am disease free and need no further treatment....I will probably therefore begin TCH this week. Even though we are moving at the same time....because there are scheduling conflicts in the upcoming weeks as well. There is never a good or perfect start date!!!
SO, my next question is, what was the first day like for you?? Are symptoms particularly troublesome the first time? Will I be okay in a few days to go off on a lark that I have planned for and looked forward to for a very long time? And is it true hair loss is usually around 2 weeks? I read that it is good to get a short haircut ahead of time and I have done that.
No one (but YOU guys!) told me to get a dental cleaning ahead of time but I did that today. So I guess I have been preparing for this decision. Was just not ready to surrender.

ETA: another reason for not getting more opinions on the slides is that City of Hope DID confirm the intial cancer findings when I went there for a second opinion....

harrie · 07-24-2007, 04:37 PM

Bonnie,
When I started doing TCH, I didn't really feel the significant effects until the 3rd treatment. My treatments were 3 wks apart. In fact after the first one I don't think I hardly felt a thing. The toxic effects are cummulative and that is why the later ones are felt more.
My hair started falling out on the 11th day following my first treatment! I just buzzed it after that.
On my lunch hr and need to go...
Maryanne

BonnieR · 07-24-2007, 04:54 PM

That is good to know Maryanne. Thanks for stopping by on your break! I guess I was concerned about the infusion reaction I have read about in relation to Herceptin. Or cardiac incidents.
I have still been taking Femara. How critical is it that I stop that ahead of time? I need to call the onc office and find out.....

Melinda · 07-24-2007, 08:33 PM

Bonnie,
What Maryanne says (Harrie) is truefor both of us. The first two treatments are relatively easy. I received Neulasta the day after each treatment to keep my wbc count up, mainly becasue I work in a retirement community. If treatments were on Thursday and the Neulasta on Friday I used the weekend to recover from the Neulasta shot and that hit on Sunday. Other than that... I felt fine for the first two treatments. AS for hair, I wear it short and before the first treatment I got it even shorter and then right begore the 3rd... I got something close to about a 1/2" crop. (Close to a GI Jane lool) That lasted until about 10 days after the 3rd treatment and then it got so thin I opted for a wig. by the fourth one I shaved my head shiny and smooth... it made me feel like I was in control, and not only that but I looked better! Bandanas and scarves are all the rage this year so I really feel quite comfortable. AND FASHIONABLE!
I can not say enough about the importance of taking your anti nausea meds... BEFORER you need them. I usually took them at least in the AM every day for 4-5 days after. THe biggest pain inthe neck is the decadron that they have you take the day before, the day of and the day after. IT has a tendency to "wire" you and sleep does not come easy those days, especially the day of treatment. ASk for some type of sleep aid or Tylenol PM, but I found that did not help so I asked for ativan. That helped!
Drink plenty of water and keep yourself hydrated at all times. Consider it a flushing of sorts taking all the bad #$*& away. You will probably expereince what is called "metal mouth" and it last for about 5 days or so.
During this time you will find what foods taste good to you and what does not appeal to you. I thrived on eggs, bananas, whole wheat bread with peanut butter and sometimes lemonade, and for whatever the reason hated sweets, but no I did not lose weight, in fact I gained 15 pounds over 18 weeks! People say that once you are finsihed it will melt away but nothing has ever melted away on this body except maybe if someone put ice cream on my head in the summer. Walk whenever possible exercise and sunshine always made me feel better.
SOme peole advise using Biotene mouthwash to prevent mouth sores. I did not get any but used Prevident toothpaste that my dentist prescribed for me, after having major dental work done prior to treatment.
Its a very doable treatment, I continued to work throughout my treatment missing no days at all, and some weeks worked 6 days. I am a culinary manager, so its not like I sit at a desk all day either.
You can do this.... I know it. We will be with you every step of the way. Feel free to email me if you wish even if its just to vent
mzerweck1@verizon.net
Go and move, and have a fling before things get cumulative with your third treatment. I found that to be the toughest, and by the fourth I was back to "normal". They will keep watchful eyes on your CBC. I was unprepared for low platelet counts during my 4 and 5th treatments so they were delayed a couple of days. It took me by surprise that is why I am mentioning it to you. If you are anything like me.... I wanted all of this to be over YESTERDAY and was not happy to hear I had to wait until the platelets went up. A minor inconvenience in the scheme of things. I am happy to report it is all over except for the herceptin now.
These are my experiences, and as I said, everyone goes thru this differently to some degree..... but it is doable! I have rambled long enough
Keep the faith!
Melinda

BonnieR · 07-24-2007, 09:04 PM

No one has mentioned decadron to me. What is the purpose? I was given a script for Compazine which I know is for nausea. Is that from the beginning?
It sounds as though, since my life is more active on weekends, that I would be better served having treatments earlier in the week....
Although are these aggrivations only during the first 6 treatments and then diminish when it is Herceptin solo??

Melinda · 07-24-2007, 09:40 PM

I received decadron to prevent allergic reactions to the chemo drugs. before the Taxotere and carboplatin are administered the gave me aloxi decadron and benadryl. Maybe your ONC will give you something else, but the decadron is a steroid to prevent allergic reactions. Ask about it... I know it kept me up most of the night the first time. After that I used the ativan to put me to sleep. ON the night of treatment I needed two!
The whole process took about 41/2 hours for me. The first time they suggested that someone accompany me just in case the benadryl made me sleepy. It did for some of the time the drugs were being administed, however as soon as I was finished I was up and running again. After that I did not bring anyone with me.... to do what watch TV with me?
Take some snacks... I took jello, banana and yogurt, along with some crackers of some type and a magazine... I could never read much because of the roller coaster sleepy and wide awake feelings I went thru.
Melinda

harrie · 07-24-2007, 11:09 PM

The decadron also prevent hand foot syndrome. I don't know if I was lucky, but I did not have a problem with nausea. They gave me antinausea meds as a premed just before the chemo and that was it. I didn't need to take afterwards at home at all. My premeds included benedryl for prevention of an allergic reaction also, plus Aloxi for nausea (I think).
Sleep....had a bit of a problem while on the decadron (day before, day of and day after tx)...but an over the counter sleep aid (Sominex) worked just fine for me.
I had the TCH every 3 wks and the herceptin weekly during chemo. So I was going in every wk.
After a while they knew I was not getting any reactions from the herceptin, so later we were able to discontinue all premeds for the herceptin only days.
Maryanne (harrie)
Oh yes...my hair is growing thicker and thicker, it feels like DAILy!

BonnieR · 07-25-2007, 06:00 AM

Maryanne, what is hand foot syndrome? The "numbness" or tingling that was mentioned to me?
Yea about your hair! Is it the same or different that before?

BonnieR · 07-25-2007, 06:23 PM

Okay, everyone, I am going to take the leap tomorrow morning. I talked to the ACS today and we reviewed my Adjuvant scores. And in general discussed the various pro and cons of the features of my pathology. They also suggested asking onc about Glutamine for the few days after treatment. And quinine water. The City of Hope doctor even phoned today to see what was going on and I told her my decision for chemo, in the face of the new findings. She agreed that searching for more opinions won't really help since I am in such a gray area. Nothing is obvious about it. Her major consideration was that I was satisfied with my decision. I think "resigned" is a better description!
So think good thoughts tomorrow morning!!!

tousled1 · 07-25-2007, 06:37 PM

Bonnie,

Sending you positive thoughts for tomorrow. Your oncologist was right in saying that you had to be happy with the decision you make. Remember you do have a say in your treatment plan. Stay informed. I'll keep you in my prayers.

07-25-2007, 09:45 PM

Hand/Foot is a tingling numbness in toes or fingers, from taxol I think. My two big toes have no feeling and some of the smaller ones are a bit numb, but not totally. It's nine months since chemo, so I don't think it will go away, but I don't think about it very often--minor side effect, for me at least.

My hair is growing in slowly because of herceptin, but is curly and thicker than before, so that's good news.

My center recommended L-Glutamine Powder while on chemo, and I used it faithfully. I think it helped. I'd say use it, as there have been studies that show it helps.

Good luck tomorrow.

BonnieR · 07-25-2007, 10:03 PM

Is L-Glutamine from a health food store?

Thanks for the good wishes. I am scared. Took a whole Ativan this evening. Think I will take one in the morning unless it is contraindicted....

I told my husband I had not set aside enough time for prayer during all of this but he assured me my Higher Power was aware of the situation! Porbably from everyone else's prayers!

harrie · 07-25-2007, 11:18 PM

Following admin of chemo, sml amts of drug leak out of very small blood vessels (capillaries) in the palms of your hand and soles of the feet. Exposre of hands and feet to heat or friction increases the amt of the drug in the capillaries and the amt of drug leakage. Results: redness, dry, peeling, or numbness or tingling sensations. Decadron will help to prevent this.
Maryanne

BonnieR · 07-26-2007, 07:50 PM

First day of chemo is DONE! I am exhaused. Was in treatment area for 9 hours total! 6 of that was the infusions. They took each of them slowly at first which added to the time. I can expect 6 hours each time for the duration of the THC course and then less time for the Herceptin alone. Got the decadron and benedryl. Actually relaxed and slept through much of it! The Atavian I took must have helped too! So, all my frears of infusion reactions are laid to rest. Was bored and restless too, after the anxiety wore off. Will bring art supplies next time.
So thank you all for getting me over the first hurdle. Next is shopping for wig and prosthetics
I feel releived to have made a decision....Today is the first day of the rest of my life.....
Love you, Bonnie

harrie · 07-27-2007, 12:21 AM

Way to go Bonnie!!! You just go for it Girl!! If you have any concerns along the way you have all of us here to be there for you!
Maryanne
ps...I purchased a wig (see my profile) that when I am wearing it, people that know me can be right up in my face and they do not have a clue I am wearing a wig!!! It looks so real!! I also have 2 caps with hair attached on the sides and back that look very real too. If you are interested getting it where I did, let me know! They are very reasonabable as real hair goes and the people that sold it to me are awesome.

BonnieR · 07-27-2007, 06:32 AM

Hi all. I slept like a rock on one Ambien and I feel rested enough to keep my appt this am for prosthesis fitting. Any random thoughts on the process?
Wig store tomorrow.